Progress - Day 271

An excerpt from Ellie and I's culinary conversation earlier this week:

Ellie:    What doing, Daddy?

Me:     Cooking dinner, El.

Ellie:    Why?

Me:     Well, because I know you'll be hungry soon and Timmy needs something other than that which makes him a Milk-a-holic.

Ellie:    Oh.

(Dramatic Pause while she pulls a chair up to stand on at the counter near me)

Ellie:    Daddy, I need that (pointing).

Me:     Why? (Two can play the "why" game)

Ellie:    Ummm because Ellie need help stir rice. (Fair enough)

Me:     Can you say "Spatula"?

Ellie:    FatchooOH

Me:     SPAT-TU-LA

Ellie:    FatCHOO-OH (smiling and very pleased with herself)

Me:     SP....SP.....SPAT

Ellie:    FFFFFFAT

Me:     Exactly.  Here it is.

We've had some good times in our home confinement of sorts these last few months.  Maybe things don't always go as they should.  But they are GOING nonetheless.  

Her progress since the end of DI has been good.  It has been three weeks since her last Vincristine chemo injection, so it is fantastic to have a break from major side effects for a while.  Her energy has been tremendous and though she physically cannot do everything as fast as Timmy does in terms of running, jumping, and climbing....she certainly tries.  I love the fact that she never gets discouraged on that front either and just keeps plugging away.  The sport of choice with the neighbor kids on the front patio as of late has been lacrosse.  Prior to the game beginning, Ellie makes sure everyone has the proper color stick and assigned ball because of course everyone gets a ball in this particular game. (Well how do YOU play?!) When she and I went outside for a bit while Polly and Timmy went to run an errand, she made sure to set a stick aside for Timmy to have when he got home.....and told me NOT to pick it up.  All righty then.  Often in the evenings, we take Daddy+Twin trips to throw the garbage away in the common bins within our complex which requires about a 30 yard jaunt.  As I am reaching to keep Timmy from leaping off the stairs in front of me, it never fails that 10 yards behind me will be the two-hands-firmly-gripping-the-railing-call "Wait for Ellie!"  

She eats pretty well during these periods between phases and has moved her waking time from 5am to close to 6:30am for the past week.  She does not sleep through the entire night still though as we seem to be in a phase where she does not like to sleep in a less than completely clean diaper.  So, she wakes sometimes as many as 5 times a night and unfortunately for Polly will only allow Mommy to change her.  This undoubtedly is again a lingering mental thing from when her chemo containing excretions from a particular drug taken a while back (cyclophosphomide) would give her skin a burning sensation.  It has also become a 2 year old attention-grabber habit which we need to break sometime soon.  She even on some occasions calls for medicine when she doesn't really need it for phantom mouth sores.  A syringe full of extra special, high quality, ultra powerful Dihydrogen Monoxide (water) seems to do the trick.  It is a tough question to answer on some nights whether her sleeping patterns are a result of chemo or her age, but Polly has done well (with enormous patience!) on trying to break her of the multiple wake up calls.  The power of the "M&M in the morning" bribe can never be underestimated.

Her blood counts have not recovered as quick as we had hoped though they tell us that is to be expected.  She is still neutropenic and now two weeks delayed on starting LTM.  Her platelets have recovered to normal levels and her hemoglobin has slowly risen, which is a very good sign because it negates the need for any transfusions.  Her white blood cell count and thus ANC value have been very much in flux.  She has had a mysterious rash of sorts for the last week and despite no other symptoms, our NP's best guess is that this may be a small virus and thus the reason for the White Blood Cells remaining low as they go to fight it off.  So, we stay inside for another week or so.  Not a bad thing as it will be raining here again most of this upcoming week and Potty Training D-Day is about to begin in the next week or so.  We are going in twice a week for labs right now until she qualifies for LTM and once she does, we'll have her LP+Vincristine and then begin a year and a half worth of daily 6MP pills.

Speaking of pills, one of the Bass Center resources open to us is the ability to see an Occupational therapist for help with taking medication.  We haven't needed this much to date because she has been so good at taking liquids orally and getting everything else through her port.  The 6MP is a difficult thing to dissolve at home despite my best efforts.  I can get it down to 90-95% in a "suspension" with certainty....but when we're talking about chemotherapy efficacy, Polly and I both see no reason to settle for anything less than 100%.  So, while exploring options we thought we would see if she could swallow a pill for the first time and the Therapist she saw today provided some tips she said normally do not work until the kids are 4 or older.  Amazingly, she swallowed every type of candy (posing as pills) they gave her.  WOW.  If she can learn to swallow the 6MP pill, we will be that much closer to our goal.  Her determination is evident and possibly wise beyond her years.

A senior student at school, who I haven't had the pleasure of having in class but know from athletics and passing in the hallways and who I also think fairly high of, put out a remarkable "tweet" a few days ago which rang very true for me:

When you are satisfied with where you're at....then it is time to worry

You see - they do learn!  :)  I smile because I think there are many moments each week where I am learning more from the 120+ kids sitting in the desks around me rather than the other way around.  Progress can be measured sometimes in inches but it is still progress.  Maybe 271 days seems like a long time to be in this battle, but when I hear things like that quote, it reaffirms that we are one day farther away from June 26th AND one day closer to reaching another milestone.

The network of parents who face the same situation as us brings a great deal of strength....especially to Polly and I when a funk can set in with regards to worry.  If there is an ease to our often quiet misery, it is the simple known fact we know to be true that we are not alone.  So, since we are feeling pretty good this weekend, it's time we return some favors and "pay it forward" as a father of a boy who has been in A.L.L. remission for 10 years now eloquently said on a message board post I read this past week.  I hope you will all keep prayers tomorrow (Sunday) in church or wherever you might find a quiet moment to yourself for our fellow little cancer warriors Lilian, Sy, Justin, Mia, Jacob, and of course our sweet Ellie-Belle.  If you have a moment, please check out the NEGU foundation - Click HERE - an amazing organization whose motto is "Never EVER Give Up" set up by two parents who lost their own little girl (Jessie) just two and a half months ago.  Ellie received one of NEGU's "Joy Jars" a while back during one of her longer chemo days at LPCH.  Jessie's supportive touch will be helping many for years to come.  Every type of outreach like that in this horrible world of children's cancer makes distance between support lines a little smaller and our network that provides legs to stand on a little stronger.  That is Progress.  Today was a good day but tomorrow there is more I can do.....and there is definitely more WE should do.

End of DI - Day 258

End points create a time of transition.  There is much to celebrate from where we've just been and we applaud the accomplishments and lessons learned looking back on very trying times.  No more PEG shots, no more awful Dauno, Doxorubicin, or cytarabine.  We will see steroids again but not in such quantity within a given period of time.  In fact, we will not need to go into LPCH more than once a week after her initial part of Maintenance gets underway.  We are done, theoretically, with the most difficult stuff.  And yet as transitions go, this is as much a beginning glimpse of what's ahead as it is us walking out of the DI doorway.  I would be remiss if I did not say it came with some uneasiness.....well, because it does.

Polly and I had the great fortune of going out up to the city to an awesome little french restaurant with her folks and brother to celebrate her birthday last night.  Perfectly cooked meats, rich sauces, truffle oil (!!!) on all the right foods, french wine.....it was a feast and a deserved night away.  Like many memorable milestones, I will never forget what we did this weekend in part because this signified an end, so to speak, of us putting a lot of things on hold.  And so after such a gleeful and appropriate amount of thankfulness for all that we've been blessed with. it made it that much harder to wake up this morning knowing the slight yet unrelenting queasy feeling is still there.  We've started to plan their 3rd birthday party, have actively sought out times for re-enrollment to swim and music classes in the next two months that were so cruelly taken away from Ellie 9 months ago, and are only about 2-3 weeks away from settling on a pre-school for the fall.  It isn't that those things are not exciting enough or that we are planning the arrival of these events with doubt they will occur.  No, it isn't that I don't think she'll be strong enough either....because all you need to do is see her for one hour these days, hear her run through her ABC's with sheer joy and then witness the amount of life that is pouring out of her every happy move to be convinced.  Rather, its me being selfish walking out of the DI door forgetting my day to day pledge for the moment.  I want more.  I want decades more.

I guess at the heart of many of my thoughts is the fact that things have been going so well in terms of her treatment milestones met for quite a while.  She has had minimal complications other than dealing with the side effects expected of the chemo drugs and now has not had to be in-patient due to illness in over 6 months.  Even more remarkable, I remember a time I not too long ago I was cursing Vincristine's name....and her she was just last Friday getting her final DI push of Vincristine where it was the only chemo drug she would get that day....thus Polly and I both considered it an "easy" day.  Experience can broaden but also wise up your perspective in a major way.  So, if we are to be allowed to get back to a semi-normal routine in the next few months and then settle into a more normal way of life until she finishes maintenance treatment in October 2013, I guess I am asking aloud that if the other shoe is going to drop at some point.....God, could you please give us a little warning first so we can prepare ourselves?  There so much life to be lived in the next few years that it just won't be fair if our normalcy is taken away again.

Forgive me....Sunday night reflections do this to me.  Tomorrow we'll be back to it and hoping to make the best out of Monday like no Monday before it.  This journey wears on me on different days than it does Polly and perhaps that's a good thing so someone can at least focus and get up to tell Timmy to get off the coffee table for the 100th time as he is pulling his sister up by the arm to join him and begin throwing things off of it.  Fatigue is a definite factor on many days.  I just don't think I am ever going to be completely comfortable with huge celebrations of cancer milestones in my own mind because it won't be truly over for a very long time.....though believe me, Ellie will never see anything but cheers and smiles on those days from me.  She is learning to ride her strider bike, dress her baby doll, use utensils like an adult, slowly but surely learning the ways of potty training, owning a room when she walks into it with a new dress on.....and doing it all while beating Leukemia and these toxic chemo drugs that are inside her.  As far as I am concerned, she can party like a rock star for milestones as much as she wants.  She certainly deserves to.  In the midst of the celebration, I cannot help but look ahead sometimes to what's possible.  As we start to immerse ourselves into what's ahead, I promise to enjoy it but it won't be without a cautious and watchful eye.

Ellie's labs on Thursday showed an increase in platelets to near 90K and an ANC value just around the 500-600 mark.  Her blood is in recovery mode again and we expect those numbers to rise significantly in the next week.  It is always such a cool thing to see how fast her numbers start to recover.  We will go back in this Thursday for labs again.  She will need to meet the minimums of 75K platelets and 750 ANC values to begin Long Term Maintenance (LTM) on either Friday or the following Monday.  LTM is a series of 30 day segments that are relatively the same.  The cycle repeats itself until her end date of October 2013.  She'll start with a Lumbar Puncture, Vincristine injection, and begin a 5 day course of Prednisone steroids.  She'll have to take a 6MP pill daily and receive a Methotrextate injection 3 times a month. In month two, we repeat it all again with the LP only occurring once every three months.....and onward we go thru LTM.  The best part of the LTM chemo is not supposed to compromise her immune system so harshly and thus the reason we can start to pick up our normal activity again.

There are parts of this journey that compare to Sisyphus' plight with his boulder.  I am certainly not one to give up on something until either my legs give way or someone yanks me off that hill, but I can sympathize with the fatigue that wears on the overall purpose when the boulder seemingly keeps rolling back down.  However, reflecting on the actual reality of the situation keeps me from getting too carried away with worry surprisingly enough.  Verbalizing vulnerability helps push the reset button and allows me to sleep easier to be ready for tomorrow.  Make no mistake, we are at a good point right now.  Last night with a little dinner celebration, Polly and I finally pushed the DI boulder off the other side for good.  At the heart of all that I am lucky to have in this world are the unrealized dreams of my kids which I am experiencing pieces of everyday.  And in this moment right now in both a scientific and social context, there is not a valid reason in the world to believe that won't continue.

Spring - Day 251

Spring is my absolute favorite time of year.  With a little touch of irony, my first full weekend since the completion of my soccer season this past week came with 75 degree weather here in the Bay Area on both days and a warmth that teases a bit of an early spring fever.  It is a nice thing to slow down from the 12-14 hour days of the last 4 months and more importantly, refocus on each day with meticulous attention to detail for the purpose of just living.  I'm not sure what that all entirely means or what it entails, but in the past few years since I've been married and with an acute sense of awareness this year, I truly enjoy getting to each day and finding out as I go.  I like the potential for things to happen....sort of like that next big adventure ahead as I spoke about in a post a while back.  Call it the warm weather bringing about grandeur ideas.  As I always tell my players, who may take a loss or a missed opportunity a little hard, there will ALWAYS be another game.  Figuring out the shape and scope of what that "game" actually is or will be could take some thought as it may not entail lacing up the boots and setting up for a kickoff, but it always comes around in one form or another.  It is up to us to look toward that next adventure with an eye on progress and an eager smile for some adventure.

A year ago I had some thoughts to do some home remodeling.  Polly and I dream of getting ourselves a home someday where the kids can spread out a bit and maybe even have a yard.  Easier said than done living on the pricey bay area peninsula.  And so, if touching this current place of ours up one wall at a time is what it will take to add value, then that's what I was going to do.  With the help of my dad, we've been about to do a few things over the last couple of years but the first major project was to start last summer where we were going to tackle the kitchen, refinish all of the cabinets, and start really chipping away at the to-do list.  Right after the twins birthdays last June 4th, I went out and gathered some color samples and looked at finishes and fixtures. The pile of reading material was significant and too big for the front seat of my car....so I moved it to the trunk.  A few days later I headed out of town to see my cousin in San Luis Obispo and got the phone call on my return home that Ellie was sick.  And the rest as they say is history.  Funny thing though, I had completely forgotten about all of that stuff in my trunk until just three weeks ago as I was opening my trunk for the first time in a very long time to get my heavy jacket out for a soccer game.  As I stood there holding the hatchback open, I gave the total inventory a once over and closed the car up.  I don't really care to read any of it for a while.  Spring this year is not going to be about seeing how much "stuff" we can acquire nor what upgrades we can do to "stuff" we already own just so we can sell it and buy bigger amounts "stuff".  This is where I believe faith enters in once again.  Faith that things on the "stuff" front will work out at some point the way they are supposed to and there shouldn't be anymore significant worry thrown its way than is absolutely necessary.  So, now here we go....back to living.

Our roller coaster is slowing for now.  We can feel it for the near future as well.  Ellie finished off her final PEG shots last Friday, her Thioguanine pills last Thursday, and has only one more injection of Vincristine next week to complete Delayed Intensification (DI) and thus close out front line treatment.  She has been in such good spirits this last week that it really is hard to figure how we are still technically in DI.  I'm not sure I have explained the PEG shots, but the experience is worth noting so you are aware of what Ellie has to endure and even more remarkable how she sports an infectious smile almost moments afterward where a picture of her is worth 100 words.  PEG-AsparaGINAISE is an enzyme injected directly into a patient's thigh muscle.  All of our body's normal living cells require a chemical called AsaparaGINE to stay alive.  Regular functioning cells have the ability to reproduce their own Asparagine when/if it happens to be broken down within the cell.  So, when the PEG is injected into the body, it breaks down and destroys the living cell Asparagine.  While normal healthy cells will then regenerate their own Asparagine, cancer cells do not have this ability and thus they die.  Ellie does not have any cancer cells in her body currently that we are aware of, so these PEG shots act as reinforcements to fortify all of the healthy strongholds, if you will.  The hard part about of all of this is getting the shots into the patients.  The dose requires there to be two syringes, two needles, and thus two sticks into Ellie.  The process requires three nurses.  While Polly usually holds her head, one nurse pins her arms to her, and the other two nurses go in-sync with a syringe each to her left and right leg so she receives both pokes together.  She screams the minute they walk into the room and doesn't let up til its over.  This is perhaps the worst chemo experience of all the drugs in terms of how its given.

When the shots are over, much like when we complete her ARAC shots at home (which go into a SUB-Q small temporary port, so we don't actually have to stick her), she starts ranting "ALL DONE - ALL DONE - ALL DONE MOMMY ALL DONE" before finally calming down and enjoying the right to pick out a band aid and usually receive a small wrapped gift from Polly (I am in major trouble next Christmas :) )  She has received PEG shots in every phase of treatment in the last 9 months.  So, in theory the PEG shots of DI were her final ones because there is no PEG given during her Long Term maintenance phase.  Thank God.

Her side effects have been decreasing slowly.  She still has an upset stomach about once every three days, but it is usually short lived and she feels better just about instantaneously.  Her sleep patterns are still totally consistent though believe me, we'll take this over the early part of February any day.  She wakes up anytime she goes to the bathroom in her diaper.  My guess is the days after the bad chemo a while back that stung her skin when it was expelled are in the back of her mind....though also she knows if she asks in the night to change her diaper, Polly will come rushing in, so we figure it could be an attention seeking tactic too.  Like clockwork though is the 5am bellow for her to be picked up and brought to our bed for a final hour of sleep.  Currently, her baby doll must accompany her along with said doll's baby blanket.  Definitely do not forget the doll's blanket or else.  Failure to grab it along with the doll when I scoop her up half asleep myself results in the entire house being woken up from screams of horror as seemingly a "third strike" crime has obviously just occurred.  But...if she can handle PEG shots, I can handle being tasked with remembering the blanket.

So, since Ellie has been on a super upswing we kicked off Spring this weekend with some quality time.  Saturday we let the kids go bike riding in the neighborhood nearby and then got to run around on the large grass area by themselves.  All flowers they see now are "Daffodils".  (yes, even the ragweed and other random weed flowers in the brush)  Ellie did the entire loop on her strider bike.  Haven't seen her do that in quite a while.  In the afternoon, I gathered some fresh ingredients from our local market and made my first attempt at a Demi Glace sauce with a red wine reduction served with mushrooms over some awesome roast lamb (meat cooked courtesy of my father in law).  We ate that night with Polly's parents and the kids all at the same table.  I tasted EVERY bite.  All the while Ellie giggling at Timmy for sucking down 8 stalks of grilled asparagus where he would start eating each piece like a chipmunk from the bottom up and then hand me the poor green carcass when he was finished.  This was a couple hours of heaven.  Today was more sunshine and more play time outside.  At one point Timmy was jumping around our walk way looking up at the moon which was up before dusk.  He was pleading with the moon for it to come down and play with him.  While I wonder where he comes up with such ideas, I marvel at his innocence.  I am inspired by Ellie's ability to forget about her PEG shots.  And, its time to spend these upcoming weeks of spring seeking simplicity.

There is a potential everyday to do something that brings a little joy into the house.  Spring time helps that idea move to the forefront.  I need to make this a top priority more often and vow to do so this year.  Kids have the uncanny ability to bring out that youthful sense of adventure in us in all likelihood to remind us not to get caught up in so many plans.  Polly and I get very cautious sometimes to celebrate the "end" of certain benchmarks in treatment.  We have even wondered aloud if a party in October 2013 when she finishes all treatment is even appropriate.  Will cancer be gone for good?  I don't know and will never know.  We will NEVER know.  But that's when spring time takes over because today is another day and anything is possible.    There is no sense in squashing what's possible TODAY because of fear for tomorrow.  So, we will celebrate the end of PEG shots with a youthful exuberance only 2 year old twins know how to employ and when Ellie goes OT (Off treatment), you better believe we're finding a store that sells ticker tape by the mile.  Spring is our time right now to find that next adventure and relish tastes, smiles, discoveries, and just BE.  That's all I want.  Well, and a contact would be nice for the man on the moon who can tell me when he'll visiting next so I can have Timmy ready to go.